How we got here

About This Book

This book is not to memorialize Karen, rather it is to shine light upon the conditions from which she suffered and to help those she left behind.

This book is dedicated to those who cannot stand up because of Intracranial Hypotension caused by a Cerebrospinal Fluid (CSF) Leak, those that cannot lie down from Idiopathic Intracranial Hypertension (IIH), those so incapacitated from Chronic Pain they cannot have a life, those maimed by Fluoroquinolone Antibiotics, and left unable to walk on their own for the rest of their lives, those who are too crippled by Ehlers-Danlos Syndrome (EDS) to hold a pen and write their own story, and finally, it is dedicated to those with Invisible Disabilities and Rare Diseases whom the Medical Establishment has forsaken. This book is your story, not just Karen's. It is the story that your health condition will not allow you to write. This is the story that you wish you could get your friends and relatives to understand.

I shared a large part of Karen's life. Writing this book has been a tear filled experience. I cry as I type these words. Help Karen and myself I find peace by learning from Karen, help promote the creation of new treatment methods. Lobby for the removal of dangerous medications from the market and demand the Medical Establishment treat those with Chronic Pain with respect and dignity.

Karen gave her life for this book, please make something good come of that and help change the world for the better for all.

Foreword from front of book

This glimpse into Karen’s own writings offer hints of the depth of her suffering, yet like many with chronic disabling illness, much of what she endured was not openly shared. Sadly, devastatingly, it is only after her suicide that a greater awareness of what she endured has come to light.

I never met Karen. I became aware of her story after she ended her own life. Her husband, Bob, has been tireless in raising awareness about the health issues from which she suffered.

She was being treated for spinal CSF leaking. My understanding is that she endured disabling symptoms for decades before a diagnosis. At times her suffering was trivialized or dismissed, at other times, she was met with compassion in the medical world. She learned to navigate the waters of our troubled health care system with variable degrees of success, like so many with chronic illness.

For those with spinal CSF leaking, despite frequent profound disability, the correct diagnosis remains elusive for months, years and even decades, as in Karen’s case. Even after a diagnosis is made, timely access to appropriate diagnostics and treatments is often far from optimal. The degree of suffering and disability is too often underestimated. The large gap between actual care and optimal care is what motivated me to co-found Spinal CSF Leak Foundation. By raising awareness, we hope to lessen such suffering. We can all learn from Karen’s experience. We need to.

Text on the Back Cover of the Book

There are four parallel stories running through Karen's writings:

What it is like to live in Chronic Pain every day, the pain of systemic tendonitides caused by the Fluoroquinolone antibiotic poisoning from Levaquin® (Levofloxacin) and what it is like to be ostracized by family and friends to end up alone with no help, no support. Too constantly hear from doctors “that there is nothing wrong with you” “you are just doing this to get attention or pain pills”.

The idea behind this book is that if you see yourself in one of those threads that you can put this book into the hands of someone, family, friend or doctor and say “This is me!” in the hopes that they 'get it' instead of thinking of you as a crazy hypochondriac out to get attention or drugs.

If someone you know who has Chronic Pain gave you this book, they want you to understand, through Karen, what they are dealing with, possibly every moment of their life. What your friend or relative wants to hear the most from you after you've read what Karen had to say is “I believe you.”

Your brain is meant to be floating around in your skull and when it is not due to Intracranial Hypotension from a Cerebrospinal Fluid (CSF) Leak or the opposite Intracranial Hypertension (too much pressure), things are getting yanked on that were never meant to be yanked on, causing debilitating pain that the word 'Headache' fails to describe.

Karen's Journal is required reading at Duke University School of Medicine.

If you have Intracranial Hypotension caused by a Cerebrospinal Fluid (CSF) Leak; Idiopathic Intracranial Hypertension (IIH); Chiari; Chronic Pain; Ehlers-Danlos Syndrome (EDS); Invisible Disabilities, Rare Diseases, Scoliosis or injury from Fluoroquinolone Antibiotic this may be the book that resonates with you.

“Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day.” - Reporter Savannah Barr, September 8th 2014 cover story of The Derrick Newspaper.

Amazon will donate 0.5% of the price of your eligible AmazonSmile book purchases to the Spinal CSF Leak Foundation whenever you shop using AmazonSmile via the links below.

Select the Spinal CSF Leak Foundation after signing in to AmazonSmile.

AmazonSmile is the same Amazon you know. Same products, same prices, same service.

Support the Spinal CSF Leak Foundation charitable organization by starting your shopping at http://smile.amazon.com and using the AmazonSmile links below.

The defunct publisher Create Space no longer sells directly. Sadly must now always pay the Amazon markup. If you do want buy a quantity of five or more to give away to your doctors and/or family contact me to discuss now to get at lower price.

Book

The books started out as Karen's: My Story found here on the web site. The web site is the original draft of the book. The actual book
The book has been heavily edited and refined since that was written and has now been professionally edited and formatted.

Sometime in the future, Real Soon Now, the book contents will be back ported to replace that so they are both the same.
I have not been able to muster the emotional energy this requires from me to do it yet.

Appendices

These appendices are obscure things that Hubby and I learned on our journey together. They are here in the hopes they point you to some lesser known techniques for health challenges that will lead you to the great health that you deserve. They are not meant to take the place of direction from doctors in the Medical Establishment; Always study for yourself, be an informed patient, my involvement with the Medical Establishment as a whole did not end well.

Author Bio

Biography of Robert Paddock 'Hubby'

I was born with “The Knack”, per Dilbert[TM], and have been programming and designing Embedded Systems ever since. I am a American Society for Quality
- Certified Quality Software Engineer, with background in Analog/Digital hardware system design and layout.

Designing low power 'Green' systems are now all the rage. I have designed Embedded Systems like these, that ran on batteries or other low power energy sources, such as Intrinsically Safe systems, for years. I understand the Medical Implants power challenges as my Dare-To-Dream Medtech Design Challenge 3rd place win demonstrates.

My nme is found in the First Edition of the uCOS-II Real Time Operating System (RTOS) book: “MicroC/OS-II The Real-Time Kernel; A complete portable, ROMable scalable preemptive RTOS”, and the wxWidget book: “Cross-Platform GUI Programming with wxWidgets (Bruce Perens Open Source)”.

Now I am returning my interest to the medical tech field, one I helped start. It is my goal to bring better imaging techniques for finding CSF Leaks to the world via T-Rays (THz) a safer 3D Real Time alternative to X-Rays.

If I may be of some help to you or your organization with technology or speaking about any of the subjects raised in this web site or Karen's book please contact me at bobpspam@gmail.com or (814) 314-9158 .

2015/03/01 21:00
· bpaddock

Warnings for Leavaquin

How many people have actually read the nearly 67 pages of warnings for Levaquin?